Inside This Issue . . .

Program Update Pg. 2

Just the Guys Pg. 3

Clinic Corner Pg. 4

Camp Wanakita Experiences Pg. 6

Fantastic Fundraising Pg. 7

Update

As the newest Regional Service Coordinator for Hemophilia Ontario I would like to greet everyone and introduce myself. I am a recent graduate of McMaster University with a Bachelor of Arts degree in History with a minor in Psychology.

My previous employment experiences have provided me with a well-rounded background including positions in both the educational and health-related fields. As an individual who is greatly interested in volunteering and the non-profit sector as a whole, I am looking forward to working as Regional Service Coordinator in the Central West Region and with the community.

I hope this upcoming year is a great one!

Cheers, Alex Plumb

Family Donates Funds raised from Golf Tournament to Hemophilia Ontario’s Central West Region and to the McMaster Hemophilia ClinicBrad Barbour, member of Hemophilia Ontario’s Central West Region raised $10,000.00 at a golf tournament he organized this summer in honour of his son Liam. The tournament was held in the Kitchener-Waterloo area and will hopefully become a yearly fundraising event held by the Barbour Family in hopes of raising awareness as well as funds for Hemophilia research and programs.

The funds raised this year were divided respectively. Hemophilia Ontario’s Central West Region received a donation of $5,000.00, and in addition, another donation of $5,000.00 was given to the Hemophilia Clinic at McMaster University.

Heartfelt congratulations and sincerest thanks are extended to Brad and the Barbour Family for all their organizational and fundraising efforts! It is families like yours which continue to make a difference within the community. Excellent work Barbour Family!

I would like to welcome Alex Plumb as the new Regional Service Coordinator for the Central West Region of Hemophilia Ontario. Alex will be with us for the next upcoming year while Barbara is off on maternity leave. Alex brings with her a wealth of experience working with youth and adultsin both the workforce and volunteer fields. Alex can be reached at the Central West Ontario Region office and she will be available weekly on Wednesday mornings at the McMaster Hemophilia Clinic.

Sincerely,

Linda D’AddarioCWOR Board Chair

Right: In the front row with their generous donation of $5,000.00 are Brad and Liam Barbour. Behind from left to right is Cathy Stutz of CWOR, Pauline Major of CHS, Sarah Scymble of Hemophilia Ontario, Venanz D’Addario Fundraising Chair for CWOR, Linda D’Addario Chair of CWOR and Alex Plumb Regional Service Coordinator of the Central West Region.

he Step-by-Step Program is Tdesigned to provide parents with information and support during the different stages or “ s t e p s ” o f t h e i r c h i l d ’ s development.

Initially, parents w i l l b e welcomed into t h e

b l e e d i n g d i s o r d e r s community by receiving Info Kits, information packages that contain educational material, information about the CHS, and useful items offered to the family by the HTC nurse coordinator at the time of diagnosis. Follow-up packages will be presented after one year and before the child starts school.

A new section of the CHS website has been developed for the Step-

by-Step Program at: www.hemophilia.on.ca/stepbystep/en

Parent to Parent - an online program that allows parents to connect with another

parent to share experiences and strategies.

Forum - an online bulletin board where parents can read about specific topics

related to raising a child with a bleeding disorder and share experiences, tips and success stories.

Just the Guys - a place where a dad can learn more about

how to take an active role in the care of his child with a bleeding disorder.

Please take the time to go online and check out this great new program. You may find the answers to questions you have. You could also lend support to another parent who has questions of their own.

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With one event behind us, and another just around the corner, I just wanted to give you an update on what is going on with Programs.

First off, thank you to all of you who came out to our BBQ. It was great to see you, and I enjoyed meeting new families. Many thanks to all those who helped out, particularly Fred and Cathy for opening their yard to us!

You should have all received your invitations for the Christmas Party and Education Day by now. It is promising to be a wonderful event. I have spoken to a lot of people who are excited about the waterpark experience. If you have never been to one of our Christmas Parties, please consider joining us this year. It is an excellent opportunity to meet other families in a fun, relaxed atmosphere. I have received word from the North Pole that we will be greeted by a visitor or two!

Some things that are in the works for the New Year are a Bleeding Disorders Information Day put on by CWOR and the medical team at McMaster. Your comments or feedback related to this would be most appreciated. Are there specific topics that you are interested in learning about, and discussing in a group environment? What is it that would make this program most beneficial to you? Please do not hesitate to contact Alex or myself with any questions or comments.

Also in the New Year, we will be sending out letters to community service organizations in the hopes of raising awareness of bleeding disorders. If you belong to a community service organization, and you would be interested in having a guest speaker come to give a presentation, please contact Alex, and we can arrange that.

The key to success with any endeavour is open lines of communication. If there is something that you think would benefit our membership, please let us know. I would be very happy to hear from any of you with your ideas and comments.

I look forward to seeing you at the Christmas Party and Education Day!

Monique LackeyProgram ChairMonique22@rogers.com

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Left: The Just the Guys Group 2006

Centre: Josh McCormack with Nurse Coordinator Kay Decker infusing before the activities of the day start.

Right: Paolo Ciccaglione tries the high ropes and succeeds!

The fifth annual Just the Guys Getaway was held celebrating your son, and an overview of the services th th provided by the society. September 15 -17 at Camp Ki-Way-Y near

Kitchener. All of the guys had a chance to try for a bulls eye during archery, swing like Tarzan on the low ropes

A special thanks to Lori Laudenbach, Kay Decker and course, and balance across the beam that was strung Keira Evans who were on site all weekend to provide high up in the trees. The beautiful weather made it training and medical support to the guys. This joint possible to go swimming, canoeing and kayaking. event between CWOR and SWOR was made possible through the generous support of Bayer, Baxter, and Wyeth.We decorated mini guitars, played messy pudding

games, and relaxed around the campfire. The action packed weekend also included a few education

Julie Serrador - Regional Service Coordinator - SWORsessions on accessing the emergency room,

Fun for all on the bouncy castle that was the centre of attention for most of the kids at the BBQ.

Face painting was also a hit! T h a n k s t o t h e t e e n volunteers who helped!

M e m b e r s L u c i a n o Calabrese, his dad and his twin brother!

N e w m e m b e r Robert Campbell and his dad Ian.

Tino Ciccaglione takes on the leap of death at Just the Guys weekend. We weren’t quite sure if he was going to make it, but as you can see, he did just fine and in the end was brought to the ground with a smile of relief!

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no longer clotting. At 9:30 pm that evening, after an emergency ultrasound, the doctor told me my baby had died...my world collapsed.Our baby boy, Gabriel, was born the next evening, Saturday, May 24th at 21:37. The moments and days that followed, as you can imagine, were grief filled and very hard to bear. God blessed us with wonderful If there's one thing I've learned, everyone has a story to tell...and this is family and friends to help us deal with our loss and the pain of it all. Our mine.It began in November 2002 when I became pregnant with our hearts were broken....would we ever be able to get through this? Time, first child. What a joy it was to know my husband and I were going to and faith in God, and that He has a plan, would help us heal.have a baby! A dream come true! I come from a large family (3 sisters

and 3 brothers), and grew up around my nieces and nephews in a It did take a lot of time, and it was while our family was dealing with the small town in Newfoundland. I've known in my heart from a young age sudden death of my oldest sister in December 2004, that I found out I that I wanted to be a mother and to have as many children as God was pregnant again. Just as my heart was healing from Gabriel's loss, would bless me with. Now I was going to have my own baby to love!my sister passes away. A loss of such tremendous proportions, my heart broke all over again. Then, to know we were expecting another As most women do, and I had no reason to think otherwise, that baby...the whole situation was truly an emotional glimpse into the "cycle anything would go wrong with my pregnancy. I had always heard of life". But, it wasn't meant to be. Upon my return to Ontario after my people say "Once you're past your three months, there's a very good sister's funeral, I miscarried three days later at 7 weeks gestation. How chance nothing bad will happen." much more could my already aching heart take? Everything became Even so, I wasn't ignorant to the fact that sometimes things can go very difficult. It actually hurt to breathe it was all so painful.wrong at any point in a pregnancy, but optimism and good, positive

feelings were on my side.Days passed, then weeks. It was at the end of January 2005, I had become pregnant again...my third time...it's supposed to be a charm At 11 weeks, I first heard his heartbeat and at 18 weeks I had my first right? My optimism was taking a beating, but I would not give up. As the ultrasound and it was then I first saw him. Both these events were very saying goes, "What doesn't kill you will make you stronger." For this emotional for me. Tears of joy came with every presentation of the pregnancy, as I was now living in Ontario, my family doctor referred me new little life growing inside me. Time wasn't long passing and before to the High Risk Clinic at the Hamilton Health Sciences. There would be we knew it, I was 6 months along. At this point, a series of events a team of perinatologists following me through this time. It would be started happening that would change our lives forever. To go into great different and we would have a baby at the end. As time passed, all was detail would take too much time here so, in a nutshell, from my going well, all was normal. The first months were uneventful and I was personal journal entries, the following occurred...It was Wednesday, feeling really good.April 2nd, 2003, I had started spotting; Saturday, April 5th, was one

day of actual bleeding, but it stopped. Spotting continued off and on Then, it all changed in what seemed like the blink of an eye, it happened until April 29th, late in the evening, I started having pain that would not so quickly. On Saturday, June 4th, 2005, I had experienced some subside. But there wasn't any bleeding. A trip to emergency and physical things, like blurred vision in one eye and a migraine headache subsequent relief of the pain, eased me somewhat. The next day, April that followed, as well as numbness in my left hand. These things passed 30th, an ultrasound revealed I was having an abruption (at 28-29 and the rest of the evening was uneventful. Until I woke Sunday morning weeks) and my baby had to be delivered! I was sent by air ambulance at 6:00 am with pain all over my belly and in the washroom I saw blood. I to the Health Sciences hospital in St.John's, Newfoundland. It was was quickly brought to McMaster by my husband after calling ahead and here that after a series of biophysical ultrasounds a determination was telling the nurses what was happening.made that I had been pregnant with twins and miscarried one at

around 9 weeks gestation. I was sent back home on Friday, May 2nd, Once there, I was on that all too familiar roller coaster ride and I 2003. I was to return to St.John's for a follow up biophysical ultrasound instinctively knew this wasn't going to be a good day. I was feeling which was scheduled for May 21st, 2003.nauseated, the pain was bad and getting worse, and the bleeding didn't stop. After the ultrasound that told the news, another abruption, and During this appointment, all was well...movements and baby probably wouldn't survive, I was ready to lay down and die myself. measurements were normal...my baby was doing fine. Then, on At 2:30 pm there was still a heartbeat, but as the bleeding continued, I Friday, May 23rd, around noon, as I stood up from my kitchen table, knew in my heart the worse was yet to come. We were between 23 to 24 blood began running down my leg and more than before. Once again, weeks gestation.sent from my hometown to the nearest hospital, bleeding continued.

Bloodwork done showed that because I had lost so much blood, it was

For all bleeding disorder patients that self-infuse at home

Having the skills to self-infuse has given you the independence to have certain procedures performed without having to come into the Hemophilia clinic beforehand. However, we would like to emphasize the importance of the clinic’s role in providing assistance for invasive procedures.

To ensure that your treatment will be adequate we would like you to inform the clinic before having any invasive procedure (ie dental extractions) - even if you know how you should treat yourself. This will allow us to confirm that you will receive an adequate dose of factor concentrate and to ensure that you receive a prescription for any other medications required. For example, for most dental procedures we recommend that you receive Cyklokapron© pre and post your procedure to prevent bleeds that can happen a few days later.

Thank you for your understanding and cooperation, Hamilton-Niagara Hemophilia Clinic

Anti-fibrinolytic agents - Cyklokapron

Cyklokapron (tranexamic acid)) is a drug that helps to hold a clot in place once it has formed. It acts by stopping the activity of an enzyme, called plasmin, which dissolves blood clots.

It does not help to actually forming a clot. This means they cannot be used instead of desmopressin, VWF concentrate or factor concentrates.

It can be used to hold a clot in place in mucous membranes such as inside the mouth.

Cyklokapron can sometimes have some mild side effects these are:

! feeling sick to the stomach (nausea)! feeling tired or sleepy! feeling dizzy! having loose bowel movements (diarrhea)! having pain in the stomach

Source: www.hemophilia.ca

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To prepare me for delivery, I received blood because once again, the the tale and therefore determine when an increase should occur. amount of blood loss was causing a problem with my clotting. My baby Another recommended precaution was to have a hepatitis vaccination wasn't hardly big enough but from the ultrasound, it's weight because fibrinogen, being a blood product and even though screened measurements gave us hope. A neonatologist had told us that if the for impurities, could cause problems if I was not protected. I received baby was big enough (at least 600g as per the ultrasound), it could be each of the three necessary injections for this at predetermined dates strong enough to possibly survive, even this early. throughout the pregnancy.

My original due date was August 12th, 2006. It seemed like an eternity But, it came to pass, on the morning of June 6th, 2005,our little, little girl away. was born at 5:03 am and she was too little to survive her journey. I remember saying amongst the tears, "Why does God want all my As each week passed, my visits to the medical daycare room were babies for his angels?" No answer came...the room was quiet. We giving me renewed hope. The nursing staff were wonderful to me and named her Gracie Gail. Her second name came from my sister who showed me through their care, how much a positive frame of mind can had passed away only months before. help tp replace doubtful thoughts. Due to everything that had

happened, I had plenty of these thoughts. Giving in to them would have While still in hospital, I was visited by Dr. Catherine Hayward from the meant giving up my dream of having a child and therefore never would hematology department. She talked with me and said she felt my have brought me to the amazing people at McMaster. I am truly losses were not just 'bad luck'. That there had to be a reason and she thankful for them and their knowledge and skills.was going to try and find out what it was. Bloodwork was still being done two days afterwards. I don't remember being told what the The baby grew and moved as usual. Ultrasounds were being done specifics were but remember being told that the level of something in every two weeks after the 22nd week and blood was being taken twice my blood was too low and until it showed to be rising or staying at the a week now. There was an unnerving time when around the 6 month same level, I would not be discharged. mark I had experienced migraine headaches and numbness in my

hand again. It was scary because in Gracie's case, it happened around Ultimately, it remained low but did not change. I was able to go home on the same time and we lost her. So, one of my High Risk Clinic team, June 8th and my husband and I, with heavy hearts, made the drive either Dr. Valerie Meuller or Dr. Patricia Smith, made arrangements for home to Newfoundland to bury Gracie next to her brother, Gabriel. me to see a neurologist as well as scheduled an ultrasound to ease any Upon returning to Ontario, I had an appointment with Dr. Hayward on fears I had. The neurologist concluded these things could be attributed July 6th. More blood was drawn. It was during this time she told me to hormonal changes and nothing to do with me possibly miscarrying. they had discovered that I have a rare genetic blood disorder called After I passed the six month mark, I became more relaxed and each hypofibrinogenemia. The level of fibrinogen in my blood is abnormally day that followed was like a milestone.low.

As my due date drew near, a decision for early induction was made. It She also explained that there are six genes that couple together to help would happen on July 26th and I would be 37 weeks and 5 days along. in clotting and two of those genes were not coupling. And, this As this date came closer, preparation for it had been a long time condition only affects me in pregnancy. Another explanation, as made coming. We had found out what we were having during an earlier to me in layman's terms was that during pregnancy, the fibrinogen acts regular ultrasound that occurred on May 24th (Gabriel's birthday). It as a "glue" and works to keep my placenta attached to my womb. The was a boy! His name would be Cole Augustus James, after both of his abnormally low level in my blood (0.6 g/l), was what caused the grandfathers.placentas to tear away and therefore resulted in the abruptions. The good thing about knowing this was there was and answer to my It all became very surreal...Cole began his journey on July 26th but he problem and with this answer came renewed hope. This is a treatable wasn't born until 1:37 pm on July 27th, 2006! What a moment of pure condition. I cried at the now new possibilities of having a baby! joy! The love that had filled the deepest parts of my heart and soul for

so long was insurmountable and flowed from me to him as I saw him for The next step now was first of all, to become pregnant and then to the first time! My baby was really here! Tears and sounds of sheer begin fibrinogen infusions as soon as possible afterward. This would happiness came from all around me and my husband and my friend bring up the level of it in my blood to help make it stronger and to were by my side as I heard the cries of our baby boy! His arms and legs maintain the pregnancy. After reading some information about the were moving all over the place...he was actually in front of me with disorder, I learned that a normal level of fibrinogen can be anywhere eyes wide open. How can I truly put into words that moment? When I from 1.6g/l to 4.2 g/l of blood. On July 6th my level was 0.6 g/l. On Sept held him for the first time I thought my heart would explode with 28th it was the same. To know where I should be to help me not emotion. My baby was in my arms looking at me as I kissed his miscarry was going to be sort of trial and error, as information about forehead and said, " We've been waiting for YOU for a long time!" I hypofibrinogenemia, I was told, is somewhat limited. I would find out...I haven't stopped smiling since then...When the news of his arrival now knew I could not give up on the possible realization of my dream! I spread, first of all to our family in Newfoundland, then to family and had work to do! friends here, everyone rejoiced with us! I couldn't wait to show him and

share him with each and every one of them!On December 13th, 2005 a home pregnancy test confirmed my slight nausea and sleepiness symptoms. My fourth pregnancy was now a If it hadn't been for the phenomenal medical staff at McMaster and their reality. I was embarking on yet another journey that would prove to be perseverance in finding out exactly what the problem was, I wouldn't the best of all, I hoped. I called McMaster with the news. A plan needed have the baby I've so longed for. My thanks and gratitude go out to ALL to be put in place immediately. I was 4 weeks pregnant with more hope of them and it comes from my overflowing heart! Some have been and faith instilled in me than ever knowing a solution was at hand. I was mentioned already, and I have to mention the nurses in the Medical now in the care of the staff in the Hemophilia Clinic. This included Kay Daycare room, whom I spent months with; Nancy, Olga, Sylvie, Lillian, Decker (Hemophilia Nurse Coordinator), Dr. Kathryn Webert and Dr. Laura, Carolyn, Debbie, Summer and Pat (all of whom are as happy for Irwin Walker. A meeting with them happened on December 21st to talk us and have said they feel like he's partly their baby, too)! He's here about a plan for treatment frequency and the dosage amount and because of all of you and your effort to see me through it all. Also to whether to use a regular IV or to have a PICC line inserted in my arm. It anyone who's name I've forgotten to mention, please know you are was decided to go with a PICC line because the frequency would be 3 thanked as well! I am blessed to have been there with all of you each times a week (M/W/F) and therefore easier on my difficult veins. The step of the way. Words will never seem like enough. You have made dosage would be increased as the pregnancy progressed. me strong and enabled me to experience a love like no other. He is our

miracle. God bless you all.As the level would be monitored once a week by blood being drawn every Monday, a pre-fibrinogen and post-fibrinogen sample would tell Kimberley Philpott

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W A N A K I T A

Well, I had an amazing experience at Wanakita. There were so many activities that were a lot of fun. I was there for one great week. Our mornings started out with a polar bear dip (better known as our shower!). Then off to the core for a yummy breakfast. Then out the door for our individual activities; which mine consisted of archery and theatre arts (my favourite). Back again to the core for lunch.

By the way the food was really awesome. Meeting back up with our cabin friends we did group activities such as canoeing and fire building. Finishing off with a campfire some nights. And that’s a typical day at Wanakita.

I learned how to inject my own factor, much easier than I thought it would be. It was really exciting afterwards because all the nurses at the Bayer Den (where you receive your factor) would compliment you.

Camp was really fun; I had a great time. I look forward to going back next year. I hope to see you there.Your Camp Buddy - Brad Golding

nervous and did not know what to expect. My Experience at Camp WanakitaBut the camp counsellors are so great. They introduced me to a couple of kids and My experience at Camp Wanakita was we got along very well. So not only did I really exciting as I had never been to camp come home with archery and swimming before, nor had I spent so much time away certificates, I also came home having made from my family before. I had a lot of fun and a couple of new friends. I hope to see them found it an amazing experience. I want to next year again!thank Hemophilia Ontario for making it

possible for me and a lot of others to go to At the camp, the nurses also told me about Camp.the Just the Boys Camp in September. My Dad was happy to find out that it was not as My name is Lex Cloete-Zito and I have Von far as Wanakita and that he could get to Willebrand's Type 1, which is somewhat come with me. We spent the weekend like hemophilia. I bruise really badly and there in the middle of September. My Dad we did not know why until I went for all my had never tried archery before and it was tests. While I was having my tests I met a fun to canoe with him. It was great to spend great nurse called Kay Decker who told me time with my Dad as he is really busy during about camp Wanakita and that it was the week and it was good to see him relax. amazing fun, which it was. I spent two weeks in July 2006 at the camp. The food Camp Wanakita is an amazing camp and if was really good and the nurses were close you are wondering what to do with your by in case any of the campers had any child during the summer vacation, then I emergencies. I know my Mom and Dad suggest you send them there and make really appreciated knowing that. My them really happy for a couple of weeks. I parents missed me a lot while I was away would also recommend Just the Guys and and even though I missed them too, I still am looking forward to next year when we had a great time.can take my younger brother along with us. Camp Wanakita is fun for most ages and I know we will all have great fun!there are a lot of exciting things to do there

which include: swimming, archery, water Thank you Kay Decker, Sarah Crymble, sports, arts and crafts and a lot more. I Barbara Myltschenko and Hemophilia must be honest, when I went there I thought Ontario for all your good work. I would never make friends as I did not

know anyone. My parents and three-year-Lex Cloete-Zitoold brother took me up to camp and I was

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Fantastic FundraisingOn June 5, 2006, about done any major fundraising twenty students and ten for Hemophilia I figured this staff from Bishop Tonnos was the time. The Chaplain Catholic Secondary School at my school who was in shaved their heads and charge of the fundraiser raised money for five t h o u g h t t h a t h a v i n g different charities. One of Hemophilia Ontario Central those students was I, Greg West Region as a charity Stutz. Our goal was to raise was a great idea and about five thousand dollars, Istarted collecting money which would be divided immediately. Twenty-four among the five charities. hundred dollars was the Those charities were that of total amount raised for The Heart and St roke Hemophilia Ontario Central Foundation, Cystic Fibrosis, West Region. But I cannot Juvenile Diabetes, Cancer take all the credit for doing Research, and Hemophilia this fundraiser because I Onta r io Centra l We st wouldn't have been able to Region. When all was said do it without friends and and done and all that was family who contributed, left were about thirty bald especially those affected by people and hundreds of Hemophilia.s p e c t a t o r s i n t h e gymnasium of the High I am happy that I did this School, the verdict was in fundraiser for Hemophilia and we did an outstanding Ontar io Centra l West job in raising money. The Region because the student final amount raised: fifteen body and the staff at my thousand dollars which was school are now fully aware then divided among the five of what Hemophilia is.charities. When I had heard that my school was doing a head shaving fund raiser I thought that it would be a fun challenge to raise money for charities and then in the end have my head shaved (which was in need of a haircut). But then my mom and I had an idea to propose the idea of having Hemophilia Ontario Central West Region as a charity. Since I've never

Above: CWOR Youth Greg Stutz with his newly shaven head!

Deren Svendsen from Baxter and Matthew D’Addario a member of the CWOR region are pictured here. Matthew received an honourary mention in Baxter’s photo contest that took place earlier this year.

Above: The Bayer group p ic tured here at this year’s Golf Tournament with Fundraising C h a i r V e n a n z D’Addario.

Left: Baxter’s golf g r o u p a l s o p i c t u r e d w i t h Venanz.

The John Deere foundation and Welland’s Notre Dame High School both supported a Red White and You event this past summer and raised $1,000.00 and $1,100.00 respectively. The money raised has been donated to the Central West Ontario Region! Thank you John Deere and Notre Dame Highschool for all your support and efforts!

Central West Region’s newsletter is a publication of the Central West Region of Hemophilia Ontario. Any opinions expressed, medical or otherwise are those of the individual author and not necessarily

of the Board of Directors of CWOR.

Central West Region

Annual CWORHemophilia Christmas Party and Educational

Day!

Where: Americana Niagara844 Lundy’s LaneNiagara Falls, ON

Waterpark fun from 1:00-4:30Banquet Room opens @ 4:00

Dinner Served @ 5:00Special arrival from Santa following Dinner

Please contact Alex Plumb for more information at (905) 522-2545 or at

aplumb@hemophilia.on.ca

Canadian Hemophilia Society

CHS 2007 AGM and Medical Symposium

May 24-27, 2007Quebec City, QC

For more information, please visit the CHS website at,

http://www.hemophilia.ca

Central West Region - Hemophilia Ontario75 Hunter St. E, Suite 102Hamilton, ON L8N 1M4

905-522-2545 or 1-800-267-8563aplumb@hemophilia.on.ca

Hemophilia Ontario

HOY Winter Getaway

February 2-4, 2007For youths ages 12-23

PlaceCall Sarah at 1-888-838-8846 for more

information.

As some of you are already aware I will be taking some time off from the Central West Region of Hemophilia Ontario to start a new and exciting project! My husband and I are expecting our first child towards the end of October.

I would like to thank all the members who I’ve met over the past year for sharing their personal stories of dealing with bleeding disorders with me. I hope that you will continue to do with Alex when you meet her at clinic, CWOR events, or when she calls to introduce herself.

I leave the region in Alex’s very capable hands. I know that she will do an outstanding job at furthering the programs and promoting hemophilia and bleeding disorders within our community at large.

Thanks again to everyone who helped me through my first year here, and we will see you soon!

Barbara Myltschenko

Carrier Project

Planning is underway to develop resources and services to meet the needs of carriers. In order to identify needs and concerns, focus groups were held across the country over the summer and carriers were invited to provide feedback by completing a survey. Over 50 surveys have been received to date and we are accepting responses until the end of the year. For more information, or to receive a copy of the survey, please contact Clare Cecchini at ccecchini@hemophilia.ca. Proposed activities to meet the identified needs include the development of a new resource: All About Carriers, and a workshop to be piloted at the CHS May 2007 AGM in Quebec City.

Advate® approved for use in Canada

August 2, 2006 MONTREAL - Baxter announced today that its recombinant factor VIII therapy, Advate®, has been approved for the use by Health Canada for the treatment of hemophilia A.

“The Canadian Hemophilia Society is pleased to see the launch of Advate,” said CHS President, Eric Stolte. “A component of quality factor replacement therapy requires that a patient and his/her physician have the option to choose products which meet a patient’s individual needs. We therefore welcome the addition of Advate to the range of quality recombinant factor VIII products currently approved by Health Canada and other international regulators, and available to Canadians with factor VIII deficiency h e m o p h i l i a . ”

It is expected that Canadian Blood Services and Héma-Québec, which distribute clotting factor concentrates to hemophilia treatment centres in Canada, will gradually phase out the current Baxter therapy, Recombinant®, and replace it with Advate over a period which will last several months.

For more information on Advate, see the Spring 2004 issue of Hemophilia Today (Vol 39, N0 1), available on-line at http://www.hemophilia.ca/en/1.0.php.